ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: deb s on May 15, 2007, 02:05:40 pm

Title: Cognitive Dysfunction
Post by: deb s on May 15, 2007, 02:05:40 pm

I am now 5 years past my AN surgery, and I'd like to offer some practical tips on coping with the very real problem of cognitive dysfunction related to AN tumor. First of all, I'm an RN who also has a strong background in psych and  the developmental sciences. So,all that knowledge, I'm afraid , was pretty much to my disadvantage in the beginning, because I knew all too well what was happening to me. The problem was trying to convince my world-reknowned physicians of the reality of my problems and that I needed help - they seemed unaware that my symptoms were related at all to my surgery.  In fact, when I explained that I was having "cognitive problems", the surgeon said he could refer me to a good psychiatrist who could provide me with cognitive therapy.  That is a term for treatment used for depression, not what is needed for the neurological problem of cognitive dysfunction, which is memory loss, problems in math, reading, spatial functioning, fatigue, etc.  Apparently from what I have read, it is not widely known that that cognitive dysfunction can be a possible problem from AN tumor.  My tumor was relatively small (1 cm), right side, middle fossa microsurgery 8 hours with no complications, but with total hearing loss, and 6 weeks of total facial paralysis. The paralysis has improved greatly, but vestibular function remains a major problem.
SO, it takes major concentration on my part to keep my balance, hear, remember things, read things much more complicated than the newspaper, and when I get tired I "can't find my words". Immediately after the surgery the first thing I noticed was that  I couldn't add and subtract in my head anymore.  When I returned to work I found myself unable to "keep all  eight balls juggled in the air" like I used to do, even though I'd go home and go directly to bed for the rest of the day.  After two years I finally had to give up my career of thirty years and take early retirement despite my best efforts.  Since my retirement I have been able to spend more time on my medical care and have found out a few things that were not provided by my AN Physicians:

1)  See a Neuropsychologist.
     Your symptoms can actually be measured, documented, and treated.  Treatment can consist of many modalities, including occupaional therapy, or medical treatment (I was started on one of the alzeimers drugs by a neurologist, which made a tremendous difference).  Measuring and documenting your symptoms is important, not just for your sanity, but also because it can qualify you for eligibility for Social Security Disibility if needed.

2)  See a Neurologist (Not a Neurosurgeon).
     When I referred myself to a Brain Tumor Center neurologist, my evaluation revealed that I was having seizures.  The kind I was having are called simple- partial seizures, which caused me to have tiny twitches of my hands and feet, barely noticeable, usually when I was really tired. But they're there ALL the time according to my EEG testing, and enough to cause memory problems and fatigue. Perhaps the seizues were from the long surgery or retraction of the brain tissue.  But treatment made a big difference in my memory and attention difficulties.

3)  Deal with your Hearing loss
     I know this is easier said than done. But, if at all possible, and at ANY cost, if you are a high functioning, active working person, who is out there in the world with people every day, if you have completely lost hearing, consider getting a BAHA.  Helen Keller said that to lose sight was to lose touch with THINGS, but that to lose hearing was to lose touch with PEOPLE.  The most common coping skill used for dealing with hearing loss is social isolation.  And I believe one of the biggest causes of the fatigue after AN treatment is just the effort it takes in trying to hear. And you can feel exhaustion and depression when you begin to lose contact with friends, family and coworkers due to your hearing loss.

4)  For Newly Diagnosed AN's
     Know that cognitive dysfunction is by no means a common post treatment problem, but that for some reason, it is not widely known or accepted by some physicians as one.  It is important that you seek an AN Physician that offers not only excellent treatment for the tumor, but also for the possible complications that may follow.

Title: Re: Cognitive Dysfunction
Post by: ppearl214 on May 15, 2007, 02:11:16 pm

Deb, thank you.  What a marvelous post and I truly appreciate the time and energy you put into compiling it.  VERY informative.

For those attending the Symposium, it will also be discussed at workshops:

http://www.anausa.org/symposium_workshops.html


I will take Deb's info with me to the symposium and ask some of the professionals that will be there about their take on it as well.

Deb, great job! Thank you!
Phyl

Title: Re: Cognitive Dysfunction
Post by: Windsong on May 15, 2007, 07:48:21 pm

Thank you deb s for outlining that succinctly.

I have raised the cognitive issues with one of my docs who did mention they could send me for testing etc.

I first noticed the changes you mentioned after a virus that strongly affected my vestibular system. One of the tests at the time was to measure the vestibular loss and one had me counting backwards and i noticed that I couldn't rattle the numbers off like i would have been able to. I could not quickly name vegetables lol. I actually had to first picture the number, then recite it. Same with the vegetables. It was weird.

Now after the An and treatment I am experiencing much of what you said here. Being tired compounds the problem. And yes, hearing difficulties do tend to make one avoid the situations that make hearing difficult.

Interesting what Helen keller said.

I will find out more about what they can offer soon. And am dealing with the hearing right now....

Thanks.

W.

Title: Re: Cognitive Dysfunction
Post by: linnilue on May 15, 2007, 08:18:07 pm

Wow...what a wonderful disclosure.  It is so important for all of us to be very aware of the symptoms that others experience and the treatment options that are available.  It is also very true, and sadly so that the doctors who treat an's do not have very good follow-up care nor do they have the knowledge and experience with all of the complications.  And more often than not, we are told "it's all in your head"  lol, and send you off to a shrink because they are not at all familiar with the complexity of post care symptomotology.  I was told at one time that I had "anxiety" and my symptoms were not real.  However, never leave a stone unturned.  I went to Boston and met Dr. McKenna and Dr. Lewis and was told that my symptoms were very real, they had seen them before and that my doctors were not being honest with me because my symptoms were due to radiation damage.  It is very frustrating when you know for sure that you are not "normal" but you begin to feel crazy when your doctors deny your issues.  I have wierd twitches, cognitive dysfunction, short term memory loss, severe fatigue, etc. etc. every day but now I know that they are real because I was validated.  So I no longer expose myelf to the doctors whom I trusted at once and live my life as a free agent.  I now only trust those who are familiar with my history and acknowledge my trauma from radiation damage.  I too am a nurse and am 2 1/2 years post linac and my life is still difficult but getting better.  That said , any type of stress or trauma will increase my symptoms tenfold.  So I msut be vigilant and careful with my life.  I try not to overdue and live my life the best I can.  It could be worse.  i have learned to accept this challenge and enjoy what I have and not the "have not."

Title: Re: Cognitive Dysfunction
Post by: Gennysmom on May 17, 2007, 04:54:20 pm

Great post!  I was just having a discussion with my ENT about this...and the differences in everyone's experience coupled with their psychological ability to cope not just with the AN, but the fallout afterwards.  I feel extremely lucky that I am working with doctors that have yet to question my experience, or make me feel like I'm making things up.  My doctor always inquires not to just the physical aspects of my recovery, but the cognitive and psychological ones as well.  His brother-in-law had an AN, so that may make him more sympathetic to these issues.  I'm glad you brought out the differences between a Psychologist and a Neuropsychologist.  I just don't understand how some doctors don't seem to be able to discern the difference between symptoms related to coping and organic dysfunction.  The brain is an amazing organ and you can't just brush off symptoms as non-organic. 

As well, dealing with the cognitive stuff, loss of hearing, tinnitus, etc, is a HUGE task to ask of someone, and you should not have to do it alone or without support.  You can't just "ignore it", you need to learn new coping skills that don't always come naturally.  This board and my AN friends have been a godsend for this....and the doctors advise people to stay away from the scary stories here!!!!  If they only knew....
 

Title: Re: Cognitive Dysfunction
Post by: Obita on May 21, 2007, 06:49:02 pm

Wow deb s, thank you!!

This post of your's is a keeper - Kathy

Title: Re: Cognitive Dysfunction
Post by: er on May 22, 2007, 11:02:03 am

Thank you Deb
Like one said this is a keeper. I feel very illiterate at times especially when I get very fatigue and it so embarrassing.  :'(
eve

Title: Re: Cognitive Dysfunction
Post by: linny on May 26, 2007, 11:37:45 pm

wow thank you, I had my surgeries 7 months ago . I had two because my brain swelled and had fluid leakage the first time around  my AN was 2.5cm  andI was told large. I still have problems with balance, left ear cant hear at all, never will regain. Im tired ALL thme, and I have short term memory loss . I thought I was imagining it all. Now I know it can last longer than a few months. I dont believe that docters know the after math of this surgery. :-\  I havent worked since, and maY NOT again.Tell me did anyone go  alittle dingy after their surgery?? ???I was way out of it. Wacky Wacky I was in ICU for a month after my first surgery. thank you all

Title: Re: Cognitive Dysfunction
Post by: tony on May 27, 2007, 12:50:31 am

Yes - a very complete post and asking more questions
I am amazed a lump that small could do quite so much harm
- sometimes the middle/heavyweight divisions 3-4-5-7 cms may cause chaos
As ever its "where" it is as much as the size ?
- also the repair process at 5 yrs is one of the longest here (?)
It is the underlying messages about the new life - returning to work etc
maybe best to attempt what you now are strong at
- rather than expose areas where you now are maybe weaker ?
Basically there are plently of jobs post-ops would really struggle to do
- they might fail - might get hurt - when the odds were always against them
Equally there are many jobs where the limitations
are quite minor and unlikely to hold them back
I had a grandad - who always used to say
"Many a man walking whitechapel (ie a tramp) - because he didnt
play his trumps" so true - play to your strengths....
So question ...
What exactly did they do/recommend to help with the cognitive issues ?
and has that now improved ?
Best Regards
Tony

Title: Re: Cognitive Dysfunction
Post by: Zanybrainy on June 07, 2007, 07:19:33 pm

Hi! I am 28 months post op and it is obvious that no matter what they say, a lot of us have experienced cognitive problems.  Last Christmas I bought my husband and I a DS nintendo with several games. With my cognitive problems and our age (55) we decided we better make the best of what we got. The game I find most helpful is Big Brain Academy.  There are a lot of games on it and you can increase the difficulty as you progress.   At first it is a little discouraging, but keep practicing because you definitely get better. I started practicing on the easy level and moved on up.  My husband and I are a little competitive and I now have a highter score than him (I don't know if that says a lot about me or a little about him). It is really fun and challenging. It is also very encouraging to see yourself improve so much at something. Definitely a confidence builder.  Am I all better?  Well, I wouldn't say that, but then I have brain surgery, post menopause and an AARP membership as excuses to choose from. Need I say more? Blessings to you all, Cath

Title: Re: Cognitive Dysfunction
Post by: okiesandy on June 08, 2007, 05:53:10 am

Sometimes it gets so frustrating to try and express your concerns to your doctors, loved ones and co-workers. I am now almost 18 months post CK and for quite a whilel before and after the treatment I would really say and do things so far off the wall that I thought I was losing it. I would substitute a word that did not even belong in a sentance I was saying. Math was too much for my brain. Handwriting, forget it. if a workd was supposed to have one A in it, mine may have three or even four.

A light bulb came on in my mind at the Audiologist office when I went to be fitted for a Transear. I read a little paper about hearing loss and how it effects your cognitive brain function. When you lose even a little hearing your brain has to take over and fill in some words. Then as the hearing becomes worse the brain misses some things and tries to fill in the blanks even more. This causes much mental and physical stress on the body. This effects all phases of your thought process. When tested I could hear only 49% of what was actually being said in a room with any kind of noise and if there were more than two people talking my brain could no sort the conversation with absolute accuracy. After I took this little test I looked at the questions he ask me in these simulated sessions and my answers amazed me. Some of thes questions I answered with all confidence that I heard correctly. Obviously I didn't. He said at the end of the day I had worked almost three times harder than most people do because I had worked that much harder to process information. Just one more small piece of a large puzzle maybe.

Sandy

Title: Re: Cognitive Dysfunction
Post by: Windsong on June 08, 2007, 06:51:08 am

Sandy, I'm glad you posted this as it made me think that's what happened yesterday while my local neighbourhood teen mowed the grass for me.... between the noise of the mower and rounds of conversation with said teen who, to me, seemed to mumble a lot (but i don't think he really was), I found myself really tired.....i know i filled in gaps for words i did not hear....who would have thought "thinking" was so fatiguing.....plus the ground is uneven there so my brain was doing double duty hearing and comprehending and keeping good balance lol.....

Title: Re: Cognitive Dysfunction
Post by: Boppie on June 08, 2007, 10:53:10 am

Windsong, I took my Grandsons to the library for story time.  The larger twin had his tonsils out 10 days ago and his speech is very soft right now.  I had to lean over to grasp half his speech.  Betwen the noise in the library, the checkout desk stamping machine, and the drive home with the AC air on high fan, I was "out of it" for an hour's nap.  In the evening I couldn't even tolerate the tinnitus from the clock tick.  I put my ear plug in for the remainder of the day.  I am still one lucky Grandma (Boppie).

Title: Re: Cognitive Dysfunction
Post by: Gennysmom on June 11, 2007, 05:52:57 pm

I have a Nintendo DS and Big Brain Academy is the best!  My best friend got it for me for my birthday 2 months after my surgery, and it really helped me progress cognitively by leaps and bounds!!!!

I find I am the same way...if I have a active listening day, forget it, I'm done for in 2-3 hours or less.  I can passively listen to things (quiet radio, regular white noise) with no problem, but if I have to concentrate or it's assaultive sound, I go down really quickly.  I use my ipod at work where it can get really noisy with office chatter to cut down on the sound...I know that sounds weird, but the all over loud non-sensical chatter of coworkers drives me insane.  Some nice music or an audiobook, and I can get so much work done.  I've also heard and read something on tinnitus having an effect on the lymbic system...our emotional system.  When I have loud tinnitus days I seem to be more tired as well.   

Title: Re: Cognitive Dysfunction
Post by: Rick Everingham on June 15, 2007, 09:55:12 am

I had my AN removed almost 4 years ago via translab.  I really can relate to the congnitive issues as I still have them to a degree.  Spelling is a challenge and when typing I simply miss words in the middle of sentences, I have to proofread my stuff carefully.  Memory is an issue also.  I also fight taste and swallowing to a degree, but all things considered, I have had an excellent outcome compared to many.  My AN was wrapping around my facial nerve cause problems with my face, however, my doctors did a great job of removing my AN and I have had no paralysis problems with my face. 

Sound, wow, who would thought that would so problematic.  I hate restaurants or crowds in rooms (such as conferences).  Trying to listen wears me out.  It is simply impossible to explain to people who have normal hearing.

Title: Re: Cognitive Dysfunction
Post by: Princess on June 15, 2007, 10:17:14 am

Thank you for your excellent post.  It was informative.

Title: Re: Cognitive Dysfunction
Post by: ixta on June 24, 2007, 10:39:57 pm

Good Post DEB! sorry I read it late. I talk with you on phone few months ago?

ya cognitive issues...I forgot to close the back end of my suburban and was flying down the highway with it OPEN!!

A guy was passing me on my left (DEAF SIDE) rolled down the window, and he YELLED , " WAAA WAAA WAA WAA"
I gave him a thumbs up smiled and yelled, "THANK YOU I LOVE THIS VEHICLE TOO" IT IS GReAT THIS SUBURBAN!"
He yelled again pointing as I turned to hear better, YOUR ASS IS HANGING IN THE WIND!@!!

I looked back almost swerv screeching off the road as I noticed the whole BACK TAILGATE lift was open sky high, lucky nothing blew out.

I was embarrassed.

Cognitive! Forgetful!

Also DONT EVER ANSWER A CELL PHONE WHILE RIDING A BIKE YOU MONO DEAFS!!!

DIZZZYYYYYWIPEEE

Cognitive! Forgetful!

(http://www.planetdan.net/pics/misc/bikecrash4.jpg)

(http://www.planetdan.net/pics/misc/bikecrash1.jpg)

Title: Re: Cognitive Dysfunction
Post by: matti on June 25, 2007, 08:24:55 am

I am 9 years post op still struggle with cognitive issues  :(  I did not not have the issues pre-surgery, but noticed them almost immediately after. My handwriting is awful, it's as if my hand is working faster than my brain and most words are scribble and even I can't read them. When speaking, I often struggle to find a correct word and will then say the reverse of what I am thinking. Instead of saying "cold" I will say "hot".  I can formulate a thought, but when it comes time to speak it's all jumbled.  When I type my words are out of order, but do not notice it while typing, so I must always go back, do a  re-read and make corrections. I find that since surgery all tasks take a little longer to accomplish. To this day, my doctors and surgeons still do not believe there is any correlation between these issues and my surgery  ??? ???

Cheryl

Title: Re: Cognitive Dysfunction
Post by: ixta on June 25, 2007, 05:03:20 pm

MAtti, same w me, Problem I have is that when I am saying  a sentence, Like for context,
I may be washing the car, and ask my wife, "hey hand me the cake".
When I meant to say "hand me the brush", Like automatic word insertion and its the wrong word!
Would be nice if a speech therapist could post something about this, areas of the brain for speech, I dont think its aphasia or apraxia?

Title: Re: Cognitive Dysfunction
Post by: kippy6 on June 25, 2007, 07:58:58 pm

Here are some terms I thought were interesting. I found most of the definitions via wikipedia.

Anomia: A problem with word finding. Impaired recall of words with no impairment of comprehension or the capacity to repeat the words.
In "The Case of Anna H." who had anomia, the neurologist/writer Oliver Sacks noted that: "When I showed her some kitchen matches, she recognized them at once, visually, but could not say the word 'match,' saying instead, 'That is to make fire.'"

Dysphasia: is a language disorder in which there is an impairment of speech and of comprehension of speech. It is caused by brain damage, usually in the left side of the brain which is responsible for language and communication. The word comes from the Greek dys- (impairment) and phasia (φασια) (speech).

Broca's Aphasia: Aphasia is defined by Websters Dictionary as a "loss or impairment of the power to use or comprehend words usually resulting from brain damage." 
In most people the Broca's area is in the lower part of the left  frontal lobe.  It is one of the main language areas in the cerebral cortex because it controls the motor aspects of speech.  Persons with a Broca aphasia can usually understand what words mean, but have trouble performing the motor or output aspects of speech.  Thus, other names for this disorder are 'expressive' and 'motor' aphasia. Depending on the severity of the lesion to Broca's area, the symptoms can range from the mildest type (cortical dysarthria) with intact comprehension and the ability to communicate through writing to a complete loss of speaking out loud.

Receptive aphasia, also known as Wernicke’s aphasia - is a type of aphasia often (but not always) caused by neurological damage to Wernicke’s area in the brain (Brodman area 22, in the posterior part of the superior temporal gyrus of the dominant hemisphere)...If Wernicke’s area is damaged in the non-dominant hemisphere, the syndrome resulting will be sensory dysprosody - the lack of ability to perceive the pitch, rhythm, and emotional tone of speech...Speech is preserved, but language content is incorrect. This may vary from the insertion of a few incorrect or nonexistent words to a profuse outpouring of jargon.

Title: Re: Cognitive Dysfunction
Post by: TP on June 25, 2007, 08:43:46 pm

Ixta - not quite sure why you posted nude bike riders.   :o I think the folks should be more concerned of not wearing clothes while riding a bike instead of answering a phone while riding a bike.

Title: Re: Cognitive Dysfunction
Post by: NF-2er on June 25, 2007, 09:07:46 pm

Hi Cheryl;

   I suppose one can then draw some conclusions about Drs : )  Have they performed any testing ( as an EEG ) for those cognitive issues?  Seems an antiepleptic may help, as per Neurontin, Lyrica, depacote, Valium class, etc. Your description of cognitive dysfunction sounds worse to me than others I've read.

   NF-2er  ; )